My Journey with a Mitochondrial Disease - "But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint." Isaiah 40:31 KJV

Diagnosis in 2006 - Parkinson's Disease and Peripheral Neuropathy, then in 2007 - Essential Myoclonus. Finally in 2011, after a muscle biopsy, I was diagnosed with Mitochondrial Myopathy as well as Peripheral Neuropathy.

Share my journey - coping with the testing, the medicines, nutrition, digestion problems, exercise, the emotions, uncertain diagnoses and no telling what else!

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Tear Duct

I wouldn’t say it’s completely open, but my tear duct appeared to be better this morning. I went to my eye doctor for the last time with this issue on Friday, I thought. The infection appeared to have finally calmed down. I definitely didn’t have the big painful knot in the corner of my eye then.

But I DO have a small knot there that has puffed up during the day today, so will be calling the eye doctor in the morning to see if I should go back on the antibiotic eye drops.

He used a syringe (no needle of course) of fluorescent liquid in the tear duct openings, top and bottom, and tried to find signs of the bright yellow color in my nostril. No such luck. Then he pushed a whole syringe of saline through. I could feel the pressure, although he had numbed my eye. Still no fluorescent signs in the nostril.

BUT, when I pressed on my eye to wipe off all the liquid around my eye – it squirted out my nostril! He thinks the pressure of pushing the saline opened the duct up at least part way.

Since it’s puffing back up some today, I’m wiping tears more than I was, too, draddit. Hopefully this is swelling from the poking he had to do Friday, and not more infection.

Antibiotics

I’ve now been off oral antibiotics for two weeks and antibiotic eye drops for three days. My digestive system appreciates that, for sure. Of course I’m still taking the probiotics. I am very thankful that all these antibiotics have not caused any tummy issue. I used Zofrin and the probiotics to protect my system. The Zofrin was causing constipation, so I went back on my MiraLax to combat that. So at least my gastric system is happy.

ENT

I’m ready to make an appointment with my new ENT. The eye doc has done all he can for this mess. I’m still having thick mucous discharge down the back of my throat. I’m clearing my throat constantly, just as I was all last year. And that’s keeping my throat irritated and my voice hoarse.

MITO

One thing’s for sure, when you have a mitochondrial disease, you never know how your body is going to react to any situation. I’m just thankful for doctors who understand that I’m not a typical patient!

I’m continuing on with the Low Carb High Fat lifestyle and finding it very easy now to comply with the no grain, no below ground vegetables, and no legumes or beans other than green beans.

I’m using an easy to make dessert that satisfies my chocolate craving and a no wheat egg bread recipe that cooks in the microwave oven in less than 2 minutes. Those two recipes alone are probably responsible for keeping me on this diet.

My eyes are better, but still not back to normal. My eye doctor really doesn’t think the change in diet is at fault, as tears are made of lipids (fats), and I’m certainly getting plenty of good Medium Chain Triglycerides in the Coconut Oil I consume daily.

He would normally prescribe steroid drops at this point, or Restasis. But we’re both reluctant to do that, because of my Mitochondrial Myopathy. So he’s recommended hot compresses twice a day and massaging the lids with a water and baby shampoo solution. The hope is that my tear glands will start producing more tears due to the stimulation.

I am losing weight for sure, and I’ve only felt hunger a few times since I started this diet in earnest in mid January. The first couple of weeks in January were spent gradually changing over and using up the food that was already in the house.

The digestion issues resolved themselves, as I had hoped they would. I do take MiraLax every morning, but I’ve been doing that for many years. My digestive system muscles are weaker than normal, thanks to the MITO, so dealing with constipation is par for the course.

I did have an upsetting situation develop in church today. We’re having some kind of short in our sound system that has caused me to go into Myoclonic jerks the last few weeks. But it seemed like today there were more sudden high squeaks from the organ and more crackling sounds out of nowhere that just set me off. By the time the service was ending I was in full Myoclonus and crying. Everyone nearby came to find out if I was OK, but all I could tell them was that I was OK, but the genetic disorder I have makes me have a hyper startle reflex.

I really appreciate their concern, but it embarrasses me when I go into one of these “fits”. The more I try to stop the jerking, the worse they get. I just have to find a way to relax and wait them out. It’s been some time since I had this much trouble with the jerking, but the constant pain I’ve been in for months now probably contributes to my tolerance level for unexpected noise being way down low.

So I continue to have muscle issues and other odd problems caused or exacerbated by MITO, but I’m also working hard to find the right combination of diet and activity to maximize my quality of life. I have been reading every book on nutrition I can get my hands on for several years now and continue to do so. And I’m currently going to physical therapy twice a week, hoping to strengthen the muscles in my neck, back, and shoulders and alleviate my pain.

Day by Day with a Movement DisorderPosted on July 6, 2011 by DBMay 18, 20162

Since April I have been tested too many times to count. Some blood tests have come back normal, and others have not. The liver function test that was abnormal right after the angioedema from the drug reaction came back normal the next time it was done, and now it’s abnormal again. That has prompted my Gastroenterologist to do a bunch of additional blood tests. And some of those results led to even more blood tests. I’m a human pin cushion right now. LOL!

I’m using the cane all the time out of the house now and basically furniture walking in the house. And I’m not jerking, even though I have cut my Primidone down to just one tablet morning and night. I see a small bit of jerking very occasionally, but nothing like it used to be.

Until my doctors figure out what’s going on, I’ve stopped taking all my other meds, vitamins, and supplements, except the Miralax. So far my blood pressure has remained in the normal range, and considering how stressful this whole business has been… that’s wonderful.

And I’m considering stopping even the Miralax. I’ll have to be careful with that, though, or the old constipation problem may return. I’m still eating prunes and nuts for a snack most afternoons, and we eat raw spinach frequently. So I’m still getting a good bit of iron in my diet, but not any supplemental iron. I’ve even stopped eating bran cereal for breakfast.

After doing a lot of research online on the various tests they are running, I’m beginning to think my problems are caused by an iron overload in my system. If all that’s happening with me does turn out to be caused by iron overload, I don’t want to make it any worse if I can help it. The good thing about it is that there are simple ways to treat that problem if caught soon enough, so we’re keeping our fingers crossed.

We were very lucky to find a Walmart that actually had the Acai on the shelf. Since it has become the new diet craze to use Acai with a Colon Cleansing routine it’s been hard to find. I think I can thank Oprah for that. LOL!

Anyway, since we now have a 6 month supply on hand I don’t mind taking 4 gel caps of it a day. I am going back to eating a little something when I take it, though, until I’m sure that it doesn’t irritate my stomach lining.

We were also able to buy 5 bottles of MiraLax at CVS for a considerably reduced cost, which will be 2 1/2 months worth for me. That is actually the most expensive medicine I’m taking now. It was much cheaper for me when it was a prescription, as my insurance was picking up a large part of the bill, but I’m sure there are a lot of people benefiting from it, now that it is OTC.

I had my yearly appointment with the Dermatologist yesterday, which went quite well. It makes me very nervous, and the stress is not good for me. But he found nothing suspicious. He has prescribed Aclovate ointment for my severely dry skin and a few patches of what he called eczema. All I could think of was great … another prescription. But I will fill it and use it sparingly on the worst places. I’m leary of using too much at a time, because it is a steroidal suspension. I have learned to be very cautious about steroid meds since my horrible reaction to Celestone when I was on PD meds.

So, first thing I did today was to do a drug check to see what the side effects and warnings were, and also to check for drug interactions. It came back OK on the drug interactions, and the cautions had to do with thickly applied ointment, particularly if it were bandaged. I won’t be doing that, so I should do just find on it.

We hit three different Thrift Stores while we were using the gas mileage and found quite a few nice lovies to add to our Plush Animals Shoppe catalog. Of course I can’t wiggle my nose and get them online, but I’m making progress slowly to get our inventory online.

I continue to do my morning exercises, and managed to do three sets today, using the 3.5 pound weights for the last set. I also used the trekking poles to walk around the house a few times this morning and stayed on the mini trampoline for 20 minutes. I’m really pleased with my improvement on the exercises, but I am not yet seeing it translate to a more fluid gait. Patience … patience.

We spent some time today trying to get all the business paperwork together in preparation for doing our taxes. That’s one chore I still do, because I am used to the TaxCut software. Hubby’s made tremendous progress this last few months in his use of the computer, but taxes would be a little too much for this year. By next year, if I need to turn it over to him, I feel sure he will be able to do it quite well. Hopefully I can continue to do this, as it’s a good way to keep my mind sharp and also keeps me aware of where I money is going. This last year was the first year of our married lives where hubby took care of all the bills all year long.

Add in a few posts to the Lost Toys Search Service, and it turned into a very productive day. Now today I’m getting ready to take a bunch of photos to start on another page of our Shoppe catalog.

I’ve been faithful with the Prune Juice/Miralax cocktail every afternoon and the constipation is getting better, thank goodness. I’ve noticed just a little bit of hand jerking when I mean to single click on the computer, but not as much as I was doing it on the Neurontin. One thing I am doing differently this time is to continue to use the suppositories, even if my digestive tract is behaving itself. At least for now I am pleased with my progress with those problems.

We continue to be busy with our toy sales, and I stay busy every day trying to keep up with the Lost Toys Search Service. Ever since I changed the routine to give me more time on the requests and less on the searches themselves I have managed to stay caught up most days. That’s quite a contrast to the 60 or so requests I was behind on before I decided I had to make a change.

The Search Service is a way to help people in an unselfish way, and that positive energy helps me through most days in a good frame of mind.

The house is bit by tiny bit getting straightened back up, with a bunch more stuff going out to the garage for our next sale. We may not have pretty weather again until Spring, but with Alabama weather you just never know what you’ll get on any given day.

I never have been into Feng Shui, or however it is spelled, but I can testify that it’s easier to get work done in an uncluttered environment. So I keep chipping away at the clutter and all those piles and stashes that have taken up residence with us. Each one conquered leaves me feeling that much better about myself.

I know that some people get more depressed as the Holidays approach, but thank goodness I thoroughly enjoy each ritual and family tradition. I can’t say I enjoy shopping, but we have such a small family that there’s not much of that to do anyway. Most of our time is spent finding all kinds of odds and ends to go in everyone’s stockings, big kids’ and children’s, too. And the wonderful music is the best of all.

I look forward to being with all our family at our grandchildren’s house this year, as always. Just thinking about it makes me smile.

I got through my first day on Gabapentin fairly well. I did not have any jerks or tics, although my walk was again like being on a ship. The room did not spin, but my balance was way off. I felt drugged much of the day. We’ll see how I do today, because the Primidone should be completely out of my system by now.

I continue to clean the house and took on one of those “stacks” that seem so easy to pile things on in the beginning and so hard to get rid of when they have grown. This was the place where we pile Sunday School books, bulletins, etc. and it had grown to be a monster. I found quarterlies as far back as 2004!!! A stack of really neat Holman commentaries on the Sunday School lessons will be given to a friend who is a part time bi-vocational preacher. A stack of Christian magazines will end up in some of my doctor’s waiting rooms, and much of it will be added to our local recycling bin. With that stack gone the dining room looks better already.

My Tai Chi attempts are improving, though pitiful looking to anyone who might see me. And I continue to do the morning exercises for my legs and neck that the therapist put me on last year. My strength is returning little my little.

It’s so much easier to set goals and work toward them now that I am off the Clonazepam and feeling better. I’m very thankful to be feeling motivated again instead of so apathetic!

Speaking of goals, I passed the 1,000 item mark on our online Catalog. I had set that as a goal to reach by the end of this year, and I met it a whole month in advance. I hope to have another thousand listed by the end of next year. The Search Service and our sales keep me plenty busy at the computer, which still serves as a way to break up my physical activity.

All in all I can say I am doing very well, and I thank God for his many blessings.

Day by Day with a Movement DisorderPosted on July 30, 2008 by DBMay 30, 2016

CAUTION: I try to be as specific with symptoms, problems, etc., as I can, so that what I write might help someone else in a similar situation. Feel free to skip this post if you’re not up to a frank discussion of bodily functions.

There’s nothing that aggravates me more than to go to my wonderful Gastrologist again with nausea and abdominal pain, only to be told to do the same thing he has had me do before. Each time I go through one of these strange “I don’t think I’m constipated” episodes, I think that it can’t possibly be the same thing I had before.

I have to use Miralax each morning, eat a high fiber breakfast cereal, drink lots of fluids, take 4 Bentyl tablets, a chewable Acidophilus tablet, and 3 Metamucil capsules every day. I’ve been on that regimen now for a long time. Until I started on the Primidone I was not having any problems with my bowels. But as soon as I started taking the Primidone, which has done wonders for my jerking and twitching, I noticed that I was heading for trouble with my elimination.

So, I increased my fiber intake, thinking that was going to be enough. And it looked like I was correct, up until the last few weeks. Then I started having a yucky taste in my mouth most of the day. I had a tickling kind of cough if I swallowed anything the least bit spicy or scratchy, and it was not going down the wrong way. I was almost constantly clearing my throat, and by the end of the day my throat was sore.

I was still having my usual 4 or 5 bowel movements a day, just as I have had ever since I went on all this elimination routine. I have problems with the muscles needed for defecation, so I have to stay just shy of diarrhea to be comfortable. I was still having times when I almost didn’t make it to the bathroom, so everything seemed as it should be as far as elimination was concerned.

So, after a miserable weekend, I decided it was time to see my Gastro, and they are so good about working me in. We saw him yesterday, and he says that I AM constipated, despite my objections to his conclusion. I am to call him Friday after being on the full Bowel Retraining routine, which I started last night.

So now, added to the list of procedures that I was already following, I took 4 TBS Milk of Magnesia this morning, plus used 2 Glycerin suppositories. I am to continue using the suppositories daily, and the Milk of Magnesia every 3 days if I still have symptoms. He also told me to go back to eating my normal diet, instead of the baked potatoes and chicken soup that I have eaten almost exclusively since Friday.

So, you know where I have been most of this day. I’m still clearing my throat constantly, and my throat is irritated, but I am not nauseated like I was yesterday morning. I’ll be eating our usual lunch today, and hopefully it will not cause the coughing or nausea to worsen.

We had a wonderful Thanksgiving Day with our whole family. Our older daughter and her hubby both love to cook. So they went overboard with the food, but it was important to them, as their first big family meal in their new home. I could tell she was getting all stressed, which is not good for her at all, but I sure was glad I didn’t have to have them all at my house. Don’t get me wrong, I love being around all of them… but I get way too panicky at the thought of having that big a group all at once.

Plus now, my house is not clean enough for me to feel comfortable entertaining. I have started trying to unclutter some parts of the house, but it took it several years to get in this mess, and it’s not going to be clean overnight. Hubby says to just ignore it …. something he seems to be able to do quite well. It bothers me, though. Every time I try to tackle it, I get worn out before I’ve made a dent! LOL

Anyway, I did have an appointment with my Gastroenterologist this week. I am still having lots of belching and gas, although the elimination difficulties have improved considerably since he put me on the Bentyl. I had read some things on the Internet that made me ask about the Metamucil and Glycolax, as far as were they contributing to the gas problem. I gave him the printout showing the times I was taking my meds, thinking he might see something that I needed to change. He was flabberghasted. He said he had no idea I was taking the Metamucil and Glycolax in the morning – that I should be taking them at night!

He also said the loud belches were from swallowing air. I told him I knew I did that when I took my meds with a big gulp, because I had trouble swallowing them. He suggested I take them in applesauce, instead of water. And …. it works! I do have a little trouble getting the swallow to come, though, thanks to my uncooperative tongue.

My tongue has started some kind of tic. I’m lip licking, or lip sucking, or moving my tongue around, rubbing against my teeth almost constantly now. I mentioned this new quirk in the PLM forum, and one of the Parkies said she had been rubbing the back of her dentures with her tongue for 14 years! She’s actually worn a hole in the back side of two of her teeth!

Speaking of the TAP, I am continuing to get 7 1/2 to 8 hours of sleep each night. My alarm watch is waking me up now to start my meds at 5:00AM. If I could just stay awake later at night, I would change the time of the first meds. But it’s all I can do most nights to stay awake until 9. I’m toying with the idea of taking a short afternoon nap, but I will wait awhile longer before I try that, to be sure I have the sleep habit well established.

I am out of the muscle relaxer meds now, but they really didn’t help a whole lot to ease the soreness and stiffness in my neck. So I’ll be calling my Orthopedist this next week.

I’m still having a lot more tremors than I had before my trip to the ER. The tremor in my right hand is unpredictable, but strikes often and hard. If I stand still for even a few moments, my right leg starts a little dance all by itself, making my whole body bounce, and sometimes now it starts up even when I am sitting down. That was only happening at church before, where I was blaming it on being cold and the seat being uncomfortable. Now it’s pretty much a given that if I’m standing, I’m dancing, and if I’m the least bit tired or upset, I’m jiggling as I sit. And walking still feels like I’m on Jello. I’m using the cane all the time when we go somewhere now, except for church. I’m still stubbornly holding out on that, as it puts too much attention on me.

I am going to have to keep track of the times of the day that all these tremors start and stop, so I can tell if it has anything to do with my meds wearing off.

So today, I can give my sleep problems an A, elimination difficulties a B-, stiff and sore neck a D, and tremors a D.

I made the rounds of my doctors again yesterday, and the specialist my Gastroenterologist sent me to does not believe that my situation warrants surgery at this time. He would rather I continue to use all of Dr. B’s arsenal of Bowel Retraining routines – glycerin suppositories daily, Milk of Magnesia every couple of days, bran cereal and prune juice daily, Miralax, and Amitiza. He also went over the list of what I can’t eat again, and it seems to get longer each time I see him.

I’m not allowed to have

soft drinks of any kindchocolatenuts, particularly peanutsany dairy products at allcruciferous vegetables, such as broccoli or cabbagebeanstomatoescoffeecaffeine of any kind

And no telling what else that I can’t think of right now.

It’s hard to believe it takes all that to keep my system from bloating, but it does. Zelnorm was much better than Amitiza at producing a stronger muscle contraction through the digestive tract, but I’ll just have to make do with the Amitiza, and hope they find a way to modify the Zelnorm and get it back on the market.

There’s now an agreement among the doctors that my elimination problem is due by and large to the weakness of the digestive tract muscles, caused by the Parkinson’s, rather than the anatomical problem that was recently discovered.

I liked this new doctor. He explained things very well, and took a lot of time with me. He explained why he thought surgery would be unlikely to have much of a chance of improving things at this time, and he also gave me some idea of what to watch out for, in case the problem worsened. I will see him again in 6 months, assuming all goes well.

I saw Dr. B, my Gastroenterologist, too, and he wants me to use the full complement of Bowel Retraining strategies for a week. If I am still bloated and having problems with gas and elimination, he will do another colonoscopy. I had one a year ago, with no polyps or other problems, so he really doesn’t expect to find anything. But he knows I’m concerned, and the colonoscopy will ease my mind.

So, with no surgery in the near future, I can stop spending so much time on the computer, reading everything I could find about this problem. I really was beginning to obsess over it, but I learned a lot. I was extremely pleased that the surgeon pulled out his huge PDR and looked up the interaction between Zelepar and Demerol as soon as I mentioned I had read about it. He agreed that I could not have the Demerol if I had the surgery. I will DEFINITELY have to get something in my wallet TODAY to that effect. If I somehow ended up in an emergency room, needing immediate surgery, my own meds could possibly kill me!! So, doing the research was worth it, if only for learning that one piece of information.

Hopefully this is the last time for a long time that I need to discuss my bowel habits LOL!! I’m sure anyone taking the time to read my posts is tired of hearing about it, as I’m tired of having to deal with it, too.

I have an appointment with my Gastroenterologist for this next week. Even though I have faithfully taken the Myralax each morning, take Metamucil every day, have been on the Bowel Retraining regimen, using the glycerin suppositories, and I’ve been really careful about what I was eating, I’m still having bowel problems. For lack of a better word for it, I would call it constipation, but it’s more like the colon and rectal muscles just are not working properly. Before I was diagnosed with PD last year, I had a four month bout with diarrhea that was very difficult to stop. The Gastro treated me with the same meds that would be used with colitis and Irritable Bowel Syndrome, so that may be what’s going on now. From what I’ve read, the IBS spasms can cause some really strange symptoms, which fit mine fairly accurately. I won’t gross you out with any details. Let’s just say things are not as they should be.

Other than that, I can report positive improvement with my right knee, which I had twisted again. We took off several days from the track, I have been staying on the computer more and reading more, and generally letting it rest. I did walk 1 quarter mile lap yesterday, and another today. Mostly I’ve been doing the exercises that the Physical Therapist outlined for me. I’m thinking I probably need to get some kind of knee brace to use in situations that might aggravate it, such as the clearing out I was doing of Daddy’s things that set this episode off.

So, I wait for the Gastro appointment, look forward to the Sleep Study next weekend, and baby my knee while it slowly heals. DH, as always, has been super considerate. He keeps me laughing over his foolishness and does so much for me. No one could ask for a more loving and caring helpmete.